Tinnitus Caused by Sudden Sensorineural Hearing Loss — Update at 7 Months

[brownbear]

Hi @Candy. Sorry for not replying. I try not to check in too much. Sounds like we are having a similar experience. Yes I am from the uk.

 

[brownbear]

@RaZaH. How are you getting on? Did you try any meditation? I suggest if you do it then get a guided recording. I try doing it without at times and it is hopeless!

 

[IreneO]

I have had a pretty good week. My tinnitus is the same as always but I have had no anxiety. Instead of a constant stream of awareness of my tinnitus I have been finding that it keeps dropping out of my awareness. Not for long but I just keep realising that I haven't noticed it for a couple of minutes, throughout the day. I'm hoping this is the start of something but I have had so many setbacks that I'm just not sure.

@brownbear I'd say you're definitely on your way to habituating. There will always be setbacks but they'll matter less as time goes on. I'm two years in (severe T) and a lot of things have helped me cope, but really time is the biggie. Good luck!

 

[brownbear]

I'm coming up on 9 months now. Without doubt things are improving. My T related depression has gone and I have very little anxiety. Still aware of it constantly. I can't tell you how disappointed I am though that the perceived volume of my tinnitus has not improved at all since my anxiety came under control. I had hoped so much that that would be the case.

 

[Reinier]

I can't tell you how disappointed I am though that the perceived volume of my tinnitus has not improved at all since my anxiety came under control. I had hoped so much that that would be the case.

I experience the same disappointment. I also assumed that habituation would also have impact on perceived tinnitus level. Not so. Perhaps not yet habituated enough?

 

[Samantha R]

@brownbear
I am so pleased to hear you are doing better. Do you think the AD has played a significant role in your recovery?
I am nearly 9 months in with relatively mild
tinnitus and even though I can't hear it all day, I still get very down about it and it's constantly on my mind. I may need an AD as well.
I'm not sure I buy the whole 'anxiety makes it sound louder' thing. Even in an anxious state, I am able to objectively know if my tinnitus is louder or softer.
Best wishes for continued recovery!

 

[brownbear]

@Samantha R . Thanks for your message. Yes I do think the AD has helped me immensely. It scares me even thinking about how low I was. My tinnitus is brutal all day everyday but somehow it is starting to mean less to me. As I said the AD has not helped the noise at all.

 

[GregCA]

I'm coming up on 9 months now. Without doubt things are improving. My T related depression has gone and I have very little anxiety. Still aware of it constantly. I can't tell you how disappointed I am though that the perceived volume of my tinnitus has not improved at all since my anxiety came under control. I had hoped so much that that would be the case.

I feel exactly the same. The anxiety of the early days is gone, but the frustration about the inability to either perform tasks or enjoy them seems here to stay.
Volume-wise there is also no change. I was hoping that brain plasticity would help migrate this sound from the forefront of the consciousness to the back when it becomes barely noticeable, but it's not happening for me.

 

[brownbear]

Maybe the next step is not having disappointment or frustration or any other feelings about our tinnitus. I don't think it's expected to have any positive feelings about it, just a gradual reduction in negative feelings until it becomes meaningless. Given the shitty nature of my T I think I will be aware of it most of the time until I reach the point that it is irrelevant to me in every way. I do think I am getting better at ignoring it. I think the word ignore implies that you are still aware of it and having to make some degree of effort. I look forward to the days where I don't need to summon positivity and effort, which is how I recall my old life, although already I can hardly remember how things used to be!

 

[erik]

If you are aware of it and it still bothers you in some capacity then you are not fully habituated yet. You may be better than you were a few months back but until you get to the point where even hearing it doesn't affect your feelings toward it, then you are still on that journey.

I am aware of my T but only if I think about it and hear it which I don't do 90% of the day or more. The weird part is that when I do this it is still pretty loud. However, like you said, because I no longer have negative feelings toward it, it is "meaningless" to me and I really don't care. I feel I started to habituate with the first year. It improved the next year and so on. I don't think I got to the full meaningless state until after 4 years. It is a slow process but it improves.

 

[InfiniteLoop]

Habituation never ends, one can habituate more and better all the time.

 

[vermillion]

@brownbear
I'm not sure I buy the whole 'anxiety makes it sound louder' thing.

Totally agree. 'Anxiety' seems as the standard explanation for medical issues that are not yet decoded. It's a bit like over-diagnosis.

Habituation never ends, one can habituate more and better all the time.

Should that to happen, isn't necessary for the T to stay stable at the same level? I'm super concerned with the T that progressively getting louder. This whole thread is very interesting. I wish I can habituate one day and my T to be a good boy with no nasty surprises.

 

[Dominic1955]

@brownbear, it's impossible to send you a private message but I wanted your opinion on using intratympanic gentamicin for menieres?
Dom

 

[brownbear]

Hi Dom,
It can be very effective when we are confident of the diagnosis. In my practice I tend to use it when someone has little residual hearing because of the risk (about 10%) of complete loss of hearing with the gent. Intra tympanic steroids are a good alternative in some patients for control of attacks of vertigo , but I wouldn't give it for the tinnitus alone. If you were going to have gent I would want to know the balance function in your better ear first so as not to leave someone with disastrous bilateral vestibular hypofunction. This would be done with caloric tests. Ideally I would get an ecog where available too.

Hope that helps

 

[Jomo]

Im not fully habituated..had a couple of accidental loud incidents this week that may have made it a lil worse. Last night the thing was louder than usual...really dont know how I slept but was definitely disappointed about it...and now that i am up it is actually pretty quiet now (fingers crossed). My hyperacusis also does not help....Its not a bad case but boy do i wish it was gone. Went to a pizza shop the other day and the guy took out a paper bag and of course shook it to open it up. That definitely hurt smh I just tell myself one day at a time

 

[Dominic1955]

@brownbear , thank you for your reply, I have experiencing vertigo I was hoping it could have been benign positional but I had a drop attack Saturday where I fell to the floor from my couch and vomited for about one hour. I also developed profuse diaphoresis.The vertigo was nasty, with room spinning in multiple directions. I am afraid it may reoccur and not getting warning its kind of devastating. What do you see in your practice with people w meneires disease? any change of recovery?
Dom

 

[Mettafort]

Hey @Dom,

My wife went to a family BBQ lastnight (without me as I wanted to relax), and she met a woman who has had Menieres since 1990. I have her details and intend to reach out to her this week. A key point she made to my wife was that she had a few "attacks" in the first couple of years, which I assume means a drop-attack, but she has not had anything for many years. However it is possible she may have had an operation, I need to confirm and will report back.

 

[Dominic1955]

@Mettafort , thank you for keeping me posted
I made an appointment with a otoneurologist in Philadelphia for 5/19
Dom

 

[Mettafort]

Your welcome @Dom, will definitely keep you posted on what I find out.

 

[brownbear]

Hi Dom, sorry to hear what has been happening. There is a type of drop attack called a tumarkin crisis which occurs in meniere's and is supposed to occur when the disease is reaching a burnout phase so that could be good news but so difficult to say. You probably know that the natural history of it is to wax and wane before eventually burning out, regardless of treatment. In my experience most people get better with conservative measures but I have performed a few labyrinthectomies for intractable disease.

 

[Dominic1955]

@brownbear , thank u for your reply is the cochlear apparatus spared with labyrinthectomies?
or you also completely loose your hearing?
I am in my office seeing patients but hard to concentrate, and anxious about having a spell in the clinic
Dom

 

[brownbear]

Hi Dom,

No you lose all hearing, so it is a last resort. I've only done it in people with no residual hearing. Endolymphatic sac decompression is another option where hearing is spared( but still a risk of total hearing loss). That operation fell out of favour as studies showed it was no better than placebo.

I feel for you in the clinic. All I can say is that when people have balance problems of any kind they can quickly lose their confidence and feel anxious, so it is not an abnormal reaction and you shouldn't feel alone. I hope that one day this is all a distant memory for you and that things improve. You WILL get there.

 

[Dominic1955]

Thank you again for your information
I am hoping to improve, one more question: do you think diuretics are helpful? Data seems not to point out any significant improvement.
How are you managing your practice? I understand you are in UK?

 

[brownbear]

We don't use diuretics much these days as the evidence is very weak. For years we have used betahistine but recent very good studies have suggested no benefit. I still give betahistine sometimes but I am quick to use intratympanic steroids if dietary changes fail to help. Meniere 's is not actually that common though so I do spend a fair bit of my time looking for other causes. Lots of people get told they have meniere's by their gp when they don't.

 

[Dominic1955]

I agree I meet people who think they have menieres but they probably have benign positional vertigo
I am taking dyazide diuretic its not doing much if anything, I did stop salt,
thanks

 

[Mettafort]

@Dom,

This is encouraging if you have t seen it:

https://mobile.nytimes.com/2015/01/...phone&smid=nytcore-iphone-share&_r=0&referer=

 

[CAgirl]

@brownbear
How are you these days? I have a constant loud hissing going on two weeks now (acoustic trauma). Having a very difficult time coping as it's not maskable during the day.

 

[brownbear]

@CAgirl sorry for the delay. Been pretty busy! I'm doing reasonably well these days. Not great but way better than the first couple of years when I was debilitated. For me it's just been extremely slow progress with a lot of ups and downs. The downs have gradually got further apart. I can go several hours without noticing my tinnitus now which I never thought would be possible as I have very loud T (not masked by shower, Hoover etc).

 

[CAgirl]

@brownear Thank you for your reply. That is amazing that you have come so far. It is so hard to imagine living with this and feeling joy again (or even sleeping normally), but I know it must be possible. Stories like yours really help!

 

[FGG]

I agree I meet people who think they have menieres but they probably have benign positional vertigo
I am taking dyazide diuretic its not doing much if anything, I did stop salt,
thanks

This is an old post I realize but in case this helps anyone else:

I went about 8 months of having frequent severe, full room spinning vertigo attacks that were fully incompacitating (if I opened my eyes or moved my head even a little I would vomit profusely)--the longest one lasted 48 hours straight.

I was initially diagnosed with Meniere's and separately vestibular migraines at one point.

I tried low salt, diuretics, migraine diet, anti inflammatory diet, elimination diets, even fasting for a week etc. Nothing seemed to help much but then I read Dr. Gacek's papers on treating presumptive "Meniere's" with antivirals and convinced a doctor to trial treat me with Acyclovir based on that and my consistently high Epstein-Barr titers. It worked extremely well for me and I have not had one attack since April of 2019.

This was unrelated to my hearing issues which were from high dose antibiotics so antivirals obviously didn't help but not having the vertigo attacks definitely helps me be less afraid of being alone.